o.t. non-hodgkins lymphoma...

barbara913

anyone know anything about it? my bf was just diagnosed yesterday with it after having a peach pit sized lump removed from his jaw line last week. if anyone has a story to share or knows a website that has boards like this, i would appreciate it. we don't have all the info back on it yet or what his treatment plan is even going to be, so it's really like starting from scratch again w/ bc... all the f'ing unknowns!!
thanks,
barbara

sns

I don't know a lot about it, but my partner was diagnosed with it 25+ years ago and is fine today. At that point they were somewhat experimental with chemo and whatever was used did it in throughly. My understanding is that it often responses very well to chemo.

BMD

A very good friend of mine was just dx with it about a month ago. He also had a large lump removed from the side of his face. He is 46. It took a very long time for him to get the right dx. His pet scan showed the cancer pretty much everywhere. He had his first chemo 2 weeks ago and already he has seen major improvement. The lumps in his mouth and neck have all but disappeared. His appetite is back and he has gained 6 pounds. He feels so much better even after chemo that he is actually working more now than he was before the treatment. He goes for #2 this week. He is going to a University hospital and that really seems to be the best place for treatment. I know he got a lot of info from the American Cancer Society site, Lance Armstong's site and The City Hope's site on the web.

Shirlann

Hi, I don't have personal experience, but I live in San Diego and our Padres General Manager (at the time) was Larry Luchinno. He had Lymphoma, ended up with a stem cell transplant, and was just fine for about 10 years. Then he got colon cancer, treated this, and is just fine and has been for about 8 years. He is now with another baseball club so I have lost track of him. But he is fine.

Good luck, and I am sure you can find a site for him similar to this one. Sooooo helpful to be with people who have walked the walk.

Hugs, Shirlann

livesstrong

Barbara,

My DH was dx 7 years ago with NHL. He had a lime size tumor in his intesine?. He didn't have surgery but had chemo in the doctors office called CHOP every 3 weeks for seven months. He also went into the hospital before each treatment for a day. He got a drug called Rituxin there. Its radioactive and at the time it was new so thats why it was done in the hospital. I think they do it in the ocn's office now. I remember our ocn telling him at the time "If you want to get cancer, this one is the one you want. it is very treatable." Seven years later he is cancer free. He has had some issues with thinking about reoccurence lately but don't we all??

There is a web site you should check out. Its Leukemia & Lymphoma Society.com. Not sure if they have a message board but I know they have a program where they match up people who have similiar dx & backgrounds. That might help him.

Please feel free to pm me with any ?'s you may have. I will try to answer them for you.

Good Luck,
Valerie

Anonymous

Hi Barbara...I'm so sorry that your bf was diagnosed, but there is definite hope for successful treatment. I work in cancer clinical trials and can tell you that the most reliable source of information, IMO, is the NCI website.

http://www.cancer.gov/cancertopics/pdq/treatment/adult-non-hodgkins/Patient (also click on the 'Health Profesional' section for more technical info)

As you can see, the type of NHL, the stage and the grade (like bc) is important in determining treatment and prognosis.

I hope that he soars (well, you know what I mean) through treatment and sees many years of NED!

Marin

livesstrong

Barbara,

Try this one as well.

http://forums.webmagic.com/ubbthreads/postlist.php?Cat=0&Board=UBB2

Valerie

Anonymous

And here's a discussion board but it's not very active. I guess we are fortunate to have bc.org because of the enormous participation and support.

http://www.acscsn.org/Forum/Discussion/?msgrid=26

Marin

barbara913

as always you ladies are the best!!!
thank you so much for your info and kind thoughts.
we have alot of researching to do now.
i'll keep you posted.
barbara

wakebrat7

Barbara:

I will keep your bf and the family in my prayers. I am sorry I don't know much about that type of cancer, but I wanted to send my well wishes anyways.

Lillie

barbara913

thanks lillie
barbara